Spenic marginal zone lymphoma

Hi JudyM and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I don’t have Splenic marginal zone lymphoma but I was diagnosed way back in 1999 at 43 with another rare (Incurable) but treatable type of NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

I had Rituximab as part of my very aggressive R-EPOCH between Dec 2013 and April 2014 and honestly did ok with it all. My regime had me in hospital for 6 days/5 nights on my two IV pumps 24/7 for well over 120 hrs for my 6 cycles...... and honestly it was ok. Yes I lost my hair as the chemo section of my treatment was very strong, the Fatigue built up over time, yes I felt some Nausea but was never sick.

The one thing you can do during all this is keep some simple activity going as regular activity helps overcome some of the fatigue.... the less you do the longer the recovery and get into the habit of drink lots everyday..... start now, aim for 2 liters a day every day as this is the main tool you have to flush the toxins from your body and protect your kidneys during the treatment months.

Rituximab on it's own is normally given as a day out-patient, expect the first infusion to take longer as your clinical team are always looking out for any reactions but be assured these are dealt with quickly.

You may find this link helpful Top Tips for the day of your Chemotherapy as you get ready for your treatment.

My chemo was a stepping stone for me to go onto other treatments (see my story below) but I turned 67 last November and I am living as good a life as any other 67 year old.

Let's look for some of the group members with this type o pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

You can also do a site word search so do put in Splenic Marginal Zone Lymphoma or SMZL into the Search Tool near the top, hit ‘Anywhere’ and this will bring up the older posts and again hot reply to see if the members are still using the site

Always around to help more or just to chat

Many thanks Mike and I will start drinking (water)!

If you are used to drinking lots it will initially be hard work but it will be a big help.

How are you feeling?

Yes feeling fine generally

Mike.

This is a good starting point for moving forward 

Hi Judy, I also have splenic marginal zone lymphoma. I was diagnosed 5 years ago. It took a while to diagnose me but after a few months of tests I was treated with rituximab. I had four sessions the first month and then one every two months for 10 months. Since finishing 4 years ago I have had no treatment and I remain in remission. I have a check up every 4 months. My spleen was initially 30 cm, no wonder I had no appetite! Since treatment I have had a number of scans and it remains a normal size if 11-13 cm.   I was very scared when I was first diagnosed as both my parents died of multiple myeloma. Now I rarely think about my condition except when my four monthly check up comes up, then I get nervous.  I hope my story gives you some reassurance.  I am almost 64 and glad to be here!   Kindest regards Kerrie

So lovely to hear from you Kerrie! You are the first person that I know to have the same thing and is very reassuring!

I have now had 5 sessions of ritoximab and have the final one on Thursday.I am feeling fine and apart from an increase in my temperature on the first session, have has no side effects.

I hope that it has worked for me too! Be great to stay I touch.

Definitely stay in touch, I had no side effects from the treatment, just felt a little tired the next day.  I am glad that you have almost finished, mine went on for a while but I didn’t mind going. It was very sociable.  What part of the country to you live in? I am in Hertfordshire. I am lucky that I live only 10 minutes from the hospital so no travelling to and fro.  I hope that your treatment has been as successful as mine. I have not met anybody else with this condition. Evidently it affects 0.13 people in every 100,000 so thats one in a million.  It makes us special to be in this exclusive group! 

I am on the Isle of Wight Kerrie but know Hertfordshire quite well as I lived there as a child.I am only a short drive from the hospital here too.Nice to be special!!

Hi Kerrie, your story most certainly has given me reassurance and many thanks for posting it. 
I too have SMZL and have been on wait and watch since it was discovered during an operation to remove my kidney for renal cancer in 2014. 
It took over a year before I got a diagnosis of NHL SMZL low grade. 
This was only diagnosed after taking bone marrow (that was fun, not).
Three days after that diagnosis I was told my kidney cancer had spread to my lungs. 
My prognosis was not great but I’ve beaten those odds and I’m still here. 
Treatment for my RCC was a tablet called Pazopanib which really didn’t agree with me and stopped working after a few months. Then in Jan 2017 I was put on immunotherapy and I’m still receiving it and fighting to stay on it. 
Last December my night sweats returned, non intentional weight loss and fatigue, after many scans we found that my SMZL has spread to lymph nodes under my right arm. I have a biopsy on Friday16th to determine is it still low grade lymphoma or has it changed to high grade. 
Once that’s determined I’ll start treatment. I’m 54 and keep relatively fit. 
Once again thanks for sharing your story, I found it very reassuring and I wish you well. Regards, Des.